The duality that cancer patients face

We are often pulled in different, opposing directions, and take time to find the balance between acceptance and anger, surrender and control, individual and group, being and thinking, living and dying. How we find balance and what that balance is influences our attitude.

Throughout my journey, I was struck by a number of dichotomies, or dualities, as I reflected on my reactions and the reactions of those around me. Looking at my reactions through a framework of opposites or contrasts gave me a better sense of where I was on a continuum, and how my state of mind evolved over time. When I was having a good week, I was clearly leaning in one direction; during a bad week, I would lean toward the other. Recognizing the dynamic prevented me from veering into depression or, at the other extreme, Panglossian optimism.

My attempts at staying centered were challenged when I relapsed much sooner than expected, after only 14 months. It took me longer to get back in the same space, and that round of treatment was harder on me. Given my treatment options – do nothing and have further relapses and death within a few years, or go the high risk route of an allogeneic stem cell transplant – the stakes seemed higher.

Here I explain some of the dualities that I came back to most often, which evolved over time.

Acceptance / Anger

A lot of my cancer-related reading, and some comments by friends and family, focused on anger being a normal reaction. How can this happen to me? Why me, married with two children, rather than my brothers, who are not? Do all my efforts to keep fit, eat well, and have a balanced life mean nothing?

Relapse made it worse – why could I not have the average 3-5 years before relapse?

However, I never really surrendered completely to anger, even during the difficult days coming to terms with my relapse and the brutal options I faced. Anger did not help me or my family and friends deal with what I ultimately had to accept and take as a given, fair or not. The darkness of anger, and its corollary, depression, simply did not resonate with what I had to do to get through the treatment, and my need to support family and friends in their support for me. Eckhart Tolle’s discussion of acceptance was helpful here, as was the focus on acceptance in many religions.

Surrender / Control

A related duality is that of surrender and control. While much of the cancer literature features language like ‘fight,’ ‘combat’ and ‘cure,’ I found myself more inclined to surrender to the fact that I was no longer in control. I had to rely on my medical team for their advice and direction. I had to rely on family and friends for practical and especially emotional support. I also had to rely on my colleagues and workplace for support during my absence. I am used to being in control, so having my life in the hands of others shifted my perspective, and gave me a new appreciation for the importance of other people. Interdependence and the trust in others that it entails became key to how I saw my relationship with family, friends, colleagues and my medical team.

While overall I needed to surrender, I also needed to figure out where I could and should exercise control. Surrender was the big picture, but the devil was in the details. I was personally able to find control on a number of levels.

First, I engaged substantively with my medical team and made an effort to be on top of my ‘file.’ Post-relapse, I became even more involved. I provided more feedback when things were not moving quickly enough, made stronger and more pointed suggestions regarding treatment options, and insisted on getting a second opinion.

Secondly, and on the emotional and psychological levels, having some control meant using the time available to me during the treatment – and between treatments – to achieve something. For me, this was a mix of walking with my wife (wonderful time to connect with her, plus the comfort of physical movement and enjoying nature and being outdoors) as well as ensuring that I remained connected to my kids. It also meant coming up with a reading list, based on my own interests and suggestions by friends, to keep me intellectually engaged and alive, rather than spend my time watching videos. Travel, both during my remission (family holiday to Australia, Paris getaway with my wife) and between the ‘salvage’ chemo and my stem cell transplant (another Paris getaway with my wife) was also important for experiencing life and creating memories.

Thirdly, writing has been a way for me to make sense of it all. During my initial treatment, my writing took the form of a daily journal, in which I kept track of what I was going through, emotionally and physically. This was reinforced by my weekly updates to staff and colleagues, which then turned into my blog. In the initial phase of my relapse treatment, I focused more on the blog, developing it further by finding and sharing health-related articles that resonated with me. The mechanics of the ‘salvage’ chemo, and the largely repetitive nature of the side effects, were less interesting, and the emotional and treatment option discussions were best captured in the blog. And similarly, I captured the various ups and downs (mainly ups – I was lucky) in my allo SCT and recovery period, allowing myself for some more in-depth commentary on books that particularly interested me.

Individual / Group

One of the first bits of advice I received was about the importance of looking after myself. In a very real sense, this was true – the lymphoma affected me, I was the one being treated, and I was the one whose mortality was in question.

Yet at the same time, it was not just about me. First of all, it was about my family, the impact that my journey was having on them, and how much we all relied on each other. It was about my friends, and it was also about my colleagues, with whom, again, I have a degree of mutual reliance and support.

My focus shifted from the ‘me’ to ‘the group,’ and what I could and should do to help them. The degree to which I could support them, by being open and sharing what I was going through, and focusing on acceptance rather than anger, would in turn help them provide more support to me – a self-reinforcing circle of support. For me, it was about myself with the group, not myself as an individual. Interdependence, not independence.

This became even more acute when I had to faced the options of doing nothing, and essentially having up to 2 years to live, or taking the high risk of the stem cell transplant in the hope of living longer. When my son asked me what I thought of these options, right after I received a brutal second opinion, my first thought was about the importance of being there longer for my family. Were I alone, doing nothing and avoiding the risks of the stem cell transplant might have been attractive. Since I have a family, however, being with them for as long as possible and for more of my kids’ milestones took priority.

Being / Thinking

Partially influenced by Eckhart Tolle, I was struck by simple awareness as distinct from thinking and analyzing. My natural personality is analytical, which has served me well professionally, but has led to struggles at the emotional and psychological levels. Being required to reflect on something like my mortality, which in many ways defies analysis, was salutary and helped me come to greater awareness. In many cases, ‘being’ was as simple as going for walks and trying to be more observant of and attentive to natural beauty, whether the flowers, trees, birdsong, the way the light played with the leaves, or the spectacularly vibrant fall colours. It was ensuring that I was truly there when talking with my family (the Blackberry was off both literally and figuratively – and it felt good when I finally gave it up!). When I was particularly weak, I found comfort in listening to classical music and just letting the music wash over and through me. My Paris getaway with my wife between treatments gave both of us a much-needed break from the rock and a hard place options before me (and before us). I did not meditate, but made a more conscious effort to find moments when I could simply to be, rather than analyze.

I also found outlets for my analytical tendencies: being on top of my file for when I met with my specialists, doing extensive reading, and writing this blog and my daily journal all helped me analyze what I was going through and helped me feel more in control.

Overall attitude

Finding the right balance between acceptance/anger, surrender/control, individual/group and being/thinking helped me develop the attitude necessary to not only ‘carry on,’ but also appreciate the good days and moments.

Much of the literature and folk wisdom stresses the importance of attitude. I am not sure this has been empirically demonstrated to affect overall lymphoma success rates (i.e., through control groups – see how positive thinking affects patients with serious illnesses). However, it clearly made the journey easier on me and the people who care about me. It also helped me enjoy and appreciate what I have – especially the people in my life, and time spent with them and doing things I enjoy. Many people commented on my positive attitude, and their comments in turn reinforced this attitude.

I am not referring to the delusional positive thinking that Barbara Ehrenreich rightly criticizes in Bright Sided. After all, cancer, particularly an aggressive form like mantle cell lymphoma, is not just a ‘learning opportunity.’ Nor can any measure of positive thinking wish it away.

However, given the alternative, having a positive attitude in dealing with cancer, and sharing that attitude with family and friends, makes an enormous difference. When I was suffering from side effects, ‘this too must pass’ was my way of getting through. When I felt better, I usually made a conscious effort to take advantage of that time, by being with family and friends, going for walks, reading, and doing a number of small projects (organizing family photos and videos, writing this blog).

After relapse, facing a stem cell transplant and attendant risks, having a positive attitude was much harder. The odds were poor (only 2 of 5 people make it) and there was the risk of a seriously compromised quality of life from chronic Graft versus Host Disease (GvHD). For me, this last possibility was a greater fear than death.

Fortunately, I made it to the one-year mark with only mild GvHD, and only a few bumps in the road after the first few rough months.

Living / Dying

The ultimate duality.

While the other dualities came early and easily to me, it was only later on, well after the immediate danger zone of my allo SCT, that I realized that I had missed the obvious duality between living and dying. Perhaps it was already embedded in the decisions I took, my wish to be as active as possible, and my ‘this too shall pass’ attitude when times were rough.

I think that, for most of us who have cancer or face death for other reasons, the living/dying duality makes us more appreciative of the present moment, not taking time for granted, and shifting our focus to the short-term – when we can do things – from the more uncertain longer-term.